Core B: Alzheimer's Disease Down Syndrome Outreach Recruitment and Education (ADDORE)

ADDORE核心摘要 参与唐氏综合征（DS）研究存在许多障碍，这些障碍也因 民族健康差距。患有DS的非洲裔美国人在年轻时死亡率不成比例地高 与患有DS的白人相比， 包括阿尔茨海默病在内的疾病。ADDORE核心的首要目标是生成 与广大社区合作，提供文化和语言上适当的材料， 提高所有社区成年DS患者的认识并参与旨在了解和 在这个人群中治疗AD我们将制作和分发教育材料， 研究和研究方法，针对成人AD与DS，并增加招募个人与 DS纳入不同人群的ABC-DS队列，并保留现有的ABC-DS受试者。成功和 将不断监测不成功的外联战略，以更新最佳做法， 科学界。增加了来自不同人群的DS成人入组，并保留了现有的 参与者将是衡量成功的标准。这个核心代表了一个近乎独特的机会， 研究人员和社区利益攸关方为增加多样性提供最佳做法， DS人群中的参与

ADDORE Core Abstract There are numerous barriers to research participation in Down syndrome (DS) that are also complicated by ethnoracial health disparities. A disproportionately higher rate of African American with DS die as young adults when compared to Whites with DS and little is known related to differences in risk for a variety of age-related diseases in DS, including Alzheimer’s disease. The overarching goal of the ADDORE Core is to generate culturally and linguistically appropriate materials, in collaboration with community at large, for increasing awareness and engagement of adults with DS from all communities into research aimed at understanding and treating AD in this population. We will generate and disseminate educational materials regarding the importance of research and research methods targeting AD in adults with DS and increase recruitment of individuals with DS into the ABC-DS cohort from diverse populations and retain existing ABC-DS participants. Successful and unsuccessful outreach strategies will be constantly monitored for updated best practices to be provided to the scientific community. Increased enrollment of adults with DS from diverse populations and retention of existing participants will be the metric for success. This core represents a near unique opportunity to engage researchers and community stakeholders to inform best practices for increasing diversity and engagement within the DS population